Rosa Lee Brown remembers her car. A 15-year-old blue Dodge Neon. It’s a stick shift and in excellent condition with less than 50,000 miles. But Mrs. Brown doesn’t understand why she isn’t allowed to drive. In her mind, she’s elderly but capable of getting behind the wheel and driving to church.
“I drove myself here,” Mrs. Brown says of the house she currently lives in. “I can drive myself other places.”
Mrs. Brown, 87, is one of five million Americans diagnosed with Alzheimer’s disease or similar dementias, a number that is expected to reach 16 million by 2050. Mrs. Brown is also the widow of the late civil rights leader Rev. Andrew J. Brown, who preached for decades at St. John’s Missionary Baptist Church and was personal friends with Dr. Martin Luther King Jr.
A retired social worker, Mrs. Brown raised three children and earned her doctorate in community psychology in her 70s. Now she is a resident at Lighthouse LLC Adult Foster Care, an affordable senior home located on the Northwestside of Indianapolis. Her son, Dr. Thomas L. Brown, pastor of Ebenezer Missionary Baptist Church, helps run the facility.
“I’m not putting down nursing homes, but seniors like to have a more caring environment that allows them to become more free,” he said. “Seniors are vulnerable to all kinds of things. I wanted to make sure that my mother was safe.”
Mrs. Brown was diagnosed with Alzheimer’s almost two years ago. She was very territorial of her home, her belongings and her blue Dodge Neon. She was also caring for her adult daughter, Adrienne L. Brown who has Down syndrome.
Although Mrs. Brown was being cared for by family members, the around the clock care became too much. Doctors advised the family that she would be better protected away from home and cared for by professionals. She and Adrienne moved to Lighthouse last October.
“It wasn’t a forced move,” said Jacqueline Brown (no relation), administrator of Lighthouse. “With the memory loss, she couldn’t take care of herself and Adrienne home alone.”
Tackling Alzheimer’s
The Obama administration has declared Alzheimer’s disease “one of the most-feared health conditions.” The administration recently issued a draft under the National Alzheimer’s Project Act as the first strategy to
fight the devastating disease that is quickly on the rise as the population ages. The top goal, is to find some effective treatments by 2025.
Many in the Alzheimer’s community have called the goal, “ambitious.”
“It is certainly an aggressive goal, but we want to aim for that goal and get the level of resource commitment and investment needed to effectively treat Alzheimer’s,” said Joanna Massee, spokesperson for the Greater Indiana Chapter of the Alzheimer’s Association. “For people with Alzheimer’s the goal might not seem soon enough but we are fighting for them.”
Scientists know that Alzheimer’s develops over time before any symptoms appear, but attempts to find better medication have been extremely slow.
More importantly, the Alzheimer’s Associations says that as many as half of today’s sufferers haven’t been formally diagnosed. The draft notes that too often, stigma and misinformation about Alzheimer’s and related dementias delay diagnosis. Part of the plan is to study how to address the health needs of stressed caregivers, and improve early detection.
“In Indiana, 120,000 people have Alzheimer’s but many more people are related to them,” said Massee. “So the disease is actually affecting hundreds of thousands in Indiana.”
Currently, The National Institutes of Health spends about $450 million a year on dementia research. The Obama administration announced it would add an extra $50 million this year, and seek $80 million more to spend on research in 2013. Additionally, it plans to spend about $26 million on some of the plan’s other necessities.
The government’s Alzheimer’s advisory council will make changes to the plan before a final strategy is released later this year.
“They’ve covered the right topics,” said Harry Johns, president of the Alzheimer’s Association. “What is needed now is more detail.”
Dealing with Alzheimer’s
For Mrs. Brown, the plan is too late. She has already lost her memory and the ability to care for herself alone. She doesn’t realize that her friends and family are aware of where she lives and visit her often. She doesn’t know how much she is loved and adored in the community.
Although Alzheimer’s has affected Mrs. Brown in many ways, she’s still, “sharp as a tack,” Thomas Brown says. She’s very aware that she’s living in a foster home for adults. Although some of her favorite furnishings have been brought from her home to make her more comfortable, she often lets it be known she would much rather be home.
“My home is still there, my car is still there, everything is there,” she said. “Where am I? Sitting in this one chair that was brought from the house along with my daughter. That’s about it.”
“The move is still very new to her,” said Jacqueline Brown. “It’s going to take time for her to get used to living this way.”
But Mrs. Brown hasn’t lost her spunk, her smile or the love for her husband.
“He did a lot for this city,” she said. “But, he’s in a much better place.”
Thomas Brown doesn’t think of himself as his mother’s caregiver. While he makes himself available at all times, he acknowledges that Jacqueline Brown and the staff at Lighthouse handle most of the work.
When he’s not visiting his mother and sister, or preaching at Ebenezer, he’s helping run the Andrew J. Brown Academy charter school on the far Eastside where he is president of the Board of Directors. Then there is the Ebenezer Retreat and Camping Institute in Putnam County that exposes inner city youth to life outside their neighborhood. Brown is the camp’s director.
Though he stays busy, he is mindful of his family’s history of Alzheimer’s. His great-grandmother had the disease, his father and now his mother.
“My thought process is kind of weird to some people because I do intensive practice in the study of Christianity from an Eastern point of view, which has a mixture of Hinduism, Buddhism and Christianity as a theology,” he said. “How I view life in this: experience is just an evolutionary process of me learning more about the human and spiritual experience of an individual. It’s a study for me.”
Does he ever get scared or sad?
“I think I get disappointed because I had expectations of others. I now only have expectations of myself,” he said. “If I get Alzheimer’s, I’ll welcome it.”
What Thomas Brown wants the community to know is that his mother is doing OK.
“The most important thing is she is safe,” he said.
10 warning signs of Alzheimer’s
– Memory loss that disrupts daily life.
– Challenge in planning or solving problems.
– Difficulty completing familiar tasks at home, at work or at leisure.
– Confusion with time or place.
– Trouble understanding visual images and spatial relationships.
– New problems with words in speaking or writing.
– Misplacing things and losing the ability to retrace steps.
– Decreased or poor judgment.
– Withdrawal from work or social activities.
– Changes in mood or personality.
Resource: Alzheimer’s Association
